Recommendations from a palliative care doctor during COVID-19
This past week, two friends of friends passed from COVID-19. One was healthier and younger than me, prompting me to reflect on what plans I have in place (or not). I’d much rather write about child engagement, but this seems par for the COVID-19 parenting course, these days. Thankfully, my social media queries about drafting a Living Will was met by someone who deals with this every day.
Brian Cruz is a Palliative Care doctor, a role that provides an extra layer of support to patients and families at any stage of a serious illness. He took some time (THANK YOU) to provide tips and guidance for those of us who might be considering this kind of planning for the first time.
You may have already made your arrangements, but need to update it. There’s information for you at the end.
Disclaimer: Please conduct your own research. This guidance is provided to give you a starting place, not to replace your own investigation and planning. Neither I, nor Brian Cruz, are responsible for any issues arising from your utilization of this information.
Identify a decision-maker
The advice provided here is straightforward, but unfortunately not enough of us take the time to make this happen.
- Have a documented decision maker in the event you are too sick to talk about your wishes for your medical care.
- Think about the things that matter most to you, and convey to your decision maker.
A decision maker is also often referred to as a surrogate or healthcare power of attorney. She/he/they is only asked to make decisions for you in case you can’t make decisions for yourself, and is asked to let the doctors know what decisions about care you would make (not what she/he/they wants). So long as you are able to convey your wishes on your own, the doctors will respect them. Not all healthcare decisions are about end of life or stopping life support; these decisions may involve whether to undergo a risky surgery, or what type of care you might want following a severe stroke.
If there is no appointed decision maker, most states have a legal order of preference. For example, in Louisiana first preference is the person you are legally married to. But if you are separated without a formal divorce and don’t want that person to make decisions for you, or if you are engaged to be married and want your fiancé to be the decision maker, that should all be written down.
Key decisions and your personal wishes
As for things that matter most, it’s hard to predict all the possible health challenges you may face. You might say “I don’t want to live hooked up to a ventilator”, but what if you were very sick and the doctors thought that if you were on a ventilator for 3-6 months you might get better? But going further, what if there was a low chance of you getting better; would you be okay with living 6 months on a ventilator if you only had a 10% chance of coming out alive? And what if you survived a prolonged illness but had suffered damage to the brain and could no longer work for a living?
Since there are an infinite number of questions, what helps doctors most if you are very sick (and can’t make decisions for yourself) is having a decision maker who knows what’s important to you. Then we can discuss the options with her/him and ask “If your loved one could talk to us now, which option do you think they would choose?” Or, “Tell us about your loved one’s wishes so we can give recommendations about the steps to choose that are in accord with her/his wishes.”
Thinking through the process
There are great websites that help take you through some of these questions and scenarios, and have templates to complete Advance Care Documents (which list your decision maker and some of your wishes). Two that I think are helpful and easy to navigate are:
Prepare For Your Care (https://prepareforyourcare.org/welcome)
The Conversation Project (https://theconversationproject.org/)
These resources have helpful information and videos to give examples and guide the process. There are also documents to complete indicating your desired decision maker.
Of note, if you are (or are likely to be) the decision maker for a spouse or parent, going through this together with them, or going through on your own and then asking them appropriate questions, will be incredibly beneficial for everyone should you or your loved ones get very sick and complex health conversations need to take place.
As a parting note, these are challenging times for everyone. I worry about COVID or other severe illness impacting my patients, my colleagues, my family, and myself. Having these conversations and preparing advance directives is a way to take some degree of control amid uncertain times. Doctors aim to respect patients’ wishes in delivering care, even when the patients are too sick to communicate it directly. Having expressed these wishes to an appointed decision maker helps make sure doctors can fulfill that goal.
- Check out the excellent and gentle book A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, by Dr. BJ Miller and Shoshana Berger
Thank you, Brian, for taking the time to share your expertise with all of us when your days are filled with caregiving, and stressful life decisions. We know this came at the expense of time with your family, and we value this guidance.
If you have a will and power of attorney drafted, it’s a good time to revisit these documents to make sure your wishes are reflected, and your assets are updated. This advice comes from a Louisiana-based source, but again, please:
- Conduct your own research
- Consult your attorney
- Move forward with a plan that makes the most sense for your life
So, if you DO NOT HAVE A WILL, or need to CHANGE your will from how it exists now, you can do the following TODAY:
- Take out a sheet of paper (it does not matter which kind) and pen (blue or another non-black ink, preferably)
- Write the date at the top, long-form would be best (Friday, the 13th (thirteenth) day of March, in the year 2020 (twenty-twenty)
- Without skipping lines, write out in clear, simple language, what you would want to happen to your property and kids under 18/pets if you were to pass away (Coronavirus or not) and to whom they would go
- Include the name of the person that you would want to manage your affairs if something were to happen to you
- When you are done, sign your full legal name after the last line (without skipping lines)
- If you have a lawyer, take a photo of it and email the photo(s) to them to be included in your file.
- Finally, put the Will in a sealed envelope with the name of that person in #4 (or my name) on the envelope. Put it in a safe place and hold on to it until we see each other again and can talk about what is needed.